{ how has your life been touched by AIDS? }

I live in Wichita, KS. My mother works in the microbiology lab at one of the largest hospitals in the city.

In 1986, the hospital had their first known AIDS patient. I think it scared people to see this disease taking hold in the Midwest. He was a gay man in his late twenties who was born and raised in Wichita, but had lived elsewhere for most of his adult life. He had come home to die.

He wanted to be with his parents in his final days. They would not visit him in the hospital out of fear and disgust. Nurses at the hospital were afraid to treat him.

My mother was not afraid.

Because the no one else wanted to enter the young man's room to take a specimen so that they could test to find out exactly what he was dying of, my mother did.

She saw how fearful everyone was of this gentle, harmless man. He shouldn't be treated like this, and she wanted to do what she could to help.

In 1988, Hospice started an AIDS buddy program. Each volunteer would be buddied with an AIDS patient. They were to visit that patient at home once a week and be a friend to them, help them with whatever they needed. Mom was one of the first volunteers. I was five years old then.

I remember going over to Bill's house. He had AIDS and Mom was his friend and I saw nothing wrong with that. He lived with his mother who was almost 80, but she took care of him because he could not get out of bed. When my mother was first paired with Bill, he was expected to live two weeks.

He lived several years.

After that, the AIDS program was cut from Hospice and became an independent charity. Mom continued to volunteer.

Her next buddy was Mike, and he didn't live very long. His mental health was deteriorating and he'd become fixated on clocks. He was a kind hearted person.

A couple months after his death, Mom was paired with Mark. Mark has been her buddy for six years. He's been through a lot since they met. Poverty, quitting smoking, meeting the love of his life, coming to terms with his estranged brother, adopting three cats, dealing with the side-effects of the cocktail drugs, seeing his friends and lover suffer the effects of AIDS and knowing that one by one, they will all die.

Now in 2001, Mom has been volunteering with the buddy program longer than anyone else in town. Many of the original volunteers have died of AIDS themselves. Everyone worries now because the program director himself is also HIV-postive and his health is not what it once was.

This Christmas, I'll volunteer for the fifth time at A Christmas to Remember, the big dinner/benefit for the local AIDS charities. It may be the last Christmas for many people there, and many faces will be missing from years past. But the purpose is remembering.

And I'll always remember.

Katie {katie@badpoetry.net 1 Dec 2001

     

     

Thanksgiving (American), 1993. I was less than two weeks away from graduating from University, young, idealistic, and full of myself. I was an activist, a feminist, a highly politicized person. I thought I knew all there was to know about AIDS/HIV, almost to the point of desensitization.

Then my brother told me he was positive.

At the time, I was the first and only person in my family to know. Numbed by his news, I threw myself into full-fledged activist mode and handed him names, places, resources. A veritiable barrage of information. I threw information at him the way some people throw up their hands in despair. I wanted to appear helpful, supportive, knowledgeable. What I realize now through the benefit of hindsight, is what he really needed was me. Not my words. Not my pithy chants. And certainly not my Doc Martens, ACT-UP soundbites, and idealistic fervor. He needed his sister to tell him she loved him and would be there for him whenever he needed.

Luckily, my brother is still around. Happy, seemingly healthy, and living his life the best way he knows how. And even though I'm 3000 miles away from home, I hope he knows that I love him, and I'll be there for him whenever he needs me.

cecily {babeephat@hotmail.com 1 Dec 2001


My best friend died of AIDS invited illness. He was older than me by 22 years. I was a young woman struggling to grow up in an abusive home and he was the only person to ever see my situation for what it was and stand up for me. I think he saved me from my situation. He was an artist, a genious intellect, and a beautiful person. I will always remember you that way, Leif Anderson.

Ravyn {ravyns@prodigy.net 1 Dec 2001

     

     

My life has been touched by AIDS litterally. I'm hiv-positive for 11 years and got the official status of AIDS-patient since 1999. I thought I was dying when I first heard of my sero-status. Most of my friends too, so they turned their backs. Eleven years later I'm still fighting. The remaining friends think it lasts to long, so now their leaving too. My job's at stake. My relationship is dying. That's living with AIDS for me now. And nothing is changing. On the contrary, I have to read articles on a new sport for some cool beings playing with death and asking for sex with hiv-positives. Where are we going now?

noorman   1 Dec 2001


How HIV affects me is not something that I have ever been quick to answer.

I think about the people who I new that died; I wish that I was better at my interpersonal skills that I had the time. I knew George, who wanted to develop a meaningful friendship with me; but I never took seriously, because I didn't have the resolve to be with the people that I love. I knew David, who I only wish that I showed that I cared for him. I knew Jeff, a childhood friend of mine who I had blamed many of my personal problems only to find out that the problems and answers to deal with them where with me; I only realized that he had AIDS, when I read his obituary, seven years after I last encountered him.

I think about what it is like not knowing how long to live. I have seen me CD4 count starting way up at 952 and then go down as low as 85. Then the CD4 count went up to just under 400, thanks to the new drugs; and then they went down again, because taken off the drugs I was taking because they caused me to be hospitalized for pancreantitus.

Even with these experiences, I still have never been sure what to say about it. It seems that HIV has always been part of my life that I reflect on. I get some answers, but there are many big voids that will never be filled.

Ted {hexman@earthlink.net 1 Dec 2001

     

     

I have friend who's positive. sometimes sick and sometimes not. When I met him, I knew he was gay, but it came as a shock to find that he was also HIV positive. I mean, I know that you don't have to look sick to be sick, but since I'd never known anyone personally to have the disease, it was still surprising. He is a sweet guy, and a good friend to everyone. He got very sick several months ago, and I was very worried about him.

I hadn't talked to him really since then... then I received a phone call from him about two months ago. I said "Wow, I'm so happy to hear from you, so glad to hear you are alright, I'm so glad, because I think about you, and I wish that we could talk more often." What I didn't say was "because I'm afraid that if I try to call, you won't be there anymore".

And he said, "thanks, I'm feeling great, but this is not a happy call," and then told me that a mutual friend and teacher had died unexpectedly of a nasty, rapid uterine cancer.

Odd, how when you are all worked up about AIDS and HIV, you don't really think about the other nasty things that come to get you.

I think maybe I should send him an e-mail. You know, just to make sure he's OK... and to make sure that he's still there.

di {virtualgrrrl@hotmail.com 1 Dec 2001


i was touched by AIDS inadvertantly. through the internet. the internet is indeed a glorious place to explore, implore, and speak out to people you barely know, people you know well, and people you think you know. one of these people was named Ian, and he had AIDS. i began to chat with Ian in late 1997. he was exceptionally friendly, warming, and somewhat sophisticated. he said he could do nothing more for himself than be an artist, and through the two years that i spoke to him, i watched his art grow and flourish. he had a very keen eye and a good heart to go with it. it was in very late 1998-early 1999 that he went to the hospital for what i thought was to be the last time. word was told by a friend of his, blossom, that he was extremely sick and on the verge of death. i prayed for him and for his familiy, and the multitudes of friends that, like myself, wished that they could hold his hand on his passing. he did not die. rather, a human being did not die. because the human being had never really lived. Ian was an extremely cruel, deceptive facade. Blossom, who had told his friends about his many hospital stays, his treatments, his hopes and dreams, was simply playing an act, falsifying the life of another human being for her own benefit. She was 'Ian', and she had lied to us. However through the torment and the understanding, the love that I and my friends felt for 'Ian' and his disease, I learned everything I know about AIDS, HIV, and what it is like for a person who has the disease to face the rest of the world. I'll always remember 'Ian', and what he stood for, and never equate those that suffer from AIDS to the deceptiveness and cruelty of Blossom.

anon  1 Dec 2001

     

     

I used to have the classic "it'll never happen to me" mentality. Then, I got an e-mail from my ex-girlfriend telling me to call her. I was checking my e-mail at work, so I went on break an called her. She came up positive. I went home early. The next day I forced my roomate to take me to get tested. She didn't know why. I came up negitave. She died about 3 months after she found out. Ironicly enough, she was killed in a car accident. AIDS did not take her. Since that time, I have had several more friends tell me they are poz, and I make them promise me one thing: whoever lives longer will be there when the other goes. I havent been to another funeral yet.....

Drew {draco15873@hotmail.com 2 Dec 2001


I've read all these stories about loved ones, and not-so-loved ones touching the lives of people. AIDS has not touched me in a personal way, that is, no person I know has or has died from AIDS.

That's not to say that AIDS has not touched my life. I have memories of being terified and confused in school in the mid '80s hearing abouit this new problem. I had just gotten over my fear of cancer, now this! I remember the first time I gave blood, looking at all those questons, answering them the best I could and wondering, wondering if that one time, with that one guy.....

AIDS has affected my life, even if there has been no personal friend or family member to bring it all home and make it real. AIDS made this world a much scarrier place to live in, but I refuse to let that fear, or any other, keep me from living my life to the fullest. I take precautions, but I still live my life the way I want to.

Deb {purrwolf@erols.com 2 Dec 2001

     

     

My Uncle died when I was about 9 years old. I miss him. I never really got a chance to get to know him because I lived far away. When I was 18 I went to see his grave with my Aunt. She was suprised I cried. I wish I could have known him.

em  18 Oct 2002


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